40 yo, newly diagnosed, initially DCIS, now IDC HER-2 positive

Hmm, was your DCIS/IDC Grade 3? HER2+ is a very aggressive form of breast cancer; fortunately, due to targeted therapies (like Herceptin and Perjeta), outcomes for HER2+ have improved in recent years. The Oncotype test is only for hormone positive/HER2- cancer, so no, your MO wouldn't order that.

Since the invasive portion of your cancer is small (less than 1 cm.), the standard treatment is Taxol + Herceptin, which is gentler than the treatments for HER2+ cancer that is larger than 1 cm. (As you can see from my signature, I ended up getting AC + THP.) Some women have been able to get Herceptin alone, but typically the initial infusions of Herceptin are given with a taxane (either Taxol or its harsher cousin Taxotere). Alas, yes, Taxol does lead to hair loss, but at least it's not associated with a very very small chance of permanent hair loss like Taxotere. You could ask your MO about Herceptin alone, and you could seek second opinions from others. But, MO is just suggesting the standard treatment; there's nothing all that unusual about her recommendation.

kmk,

If you do chemo check out cold caps. There are some threads with people that saved their hair during chemo.

Yes, it is hard to explain cancer to young children. I believe there are some books out there (Help, fellow BCO members???) that are useful in that regard. My daughter was 15, and her brothers have autism so I only had to really explain things to my daughter. (The boys were freaked out by the wig, and have a new appreciation for my natural hair since it grew back!) Surgeons are not experts on chemo; oncologists are. Your surgeon (believing you had DCIS) meant well, but no one knows whether DCIS is invasive until the surgery and pathology report. ((Hugs))

My dx was the same as yours, and my oncologist felt that I didn't need Herceptin because the area was so tiny. I didn't push for it, even though as a nurse I felt I should. A year and a half later the cancer was back, in the same spot and an additional spot. Because I had already had a lumpectomy and radiation, I had to have a mastectomy. I went ahead and did both. Please go for the most aggressive treatment your doctor recommends.

As for hair loss, I have alopecia universalis, so I didn't have hair anyway. I get compliments daily on how gorgeous my hair is, and it's a 14. wig from China! It's all in the attitude!!